"But you’ve always been the kind of person who shrugs off why shit happens and just keeps going.
This is not your last chance but it’s the one that counts."
In 1842, Charles Dickens’ observed solitary confinement at Philadelphia's Eastern State Penitentiary and wrote about it in his travelogue, “American Notes for General Circulation.” Linda and I also visited 170 years later, appropriately and unplanned on Halloween weekend. The autumn wind whipped the ivy on the grand, stony walls.
It is more chilling inside. Dickens was preoccupied by the mental torment suffered at Eastern State, originally intended as a solitary-only institution and now home to Halloween tours and neighbor to high-end Fairmount Avenue coffee shops. His remarks on new prisoners, “led to the cell from which he never again comes forth, until his whole term of imprisonment has expired… a man buried alive….” could also speak to our collective fear of chronic illness. The terror that even as we’re offered absolute agency over our bodies, we can be as equally and quickly imprisoned and isolated by it. MS, at its worst, dispels the illusion of control.
But the day was light; a professor and feminist, Linda processes life with sardonic fearlessness. I addictively read her anecdotes about family and self. She’s black and intelligent, sexual and self-possessed with a Ph.D.; the world often has trouble with any of these things in women, let alone all. Linda, a natural academic,, had just moved to Philly to take a job as the only black, female professor at Temple’s Intellectual Heritage Program. She and her lit students share that spirit of discovery you only get from the teacher you still consider your favorite, the one who introduced society, ideas and consciousness to your life.
But for someone guided by intellect and will, it’s hard to understand and accept what MS means, will mean. MS introduces unpredictable, disappointing things. She got the call about the brain lesions while she stood outside of class at Harvard, preparing a presentation on the African- American Tuskeegee syphilis patients (one of our country’s most awful examples of institutional victimization). Linda managed to go back into class and present, capably. Her attending doctor discussing her “like some horse on an auction block” when talking to weary, jittery residents in the same semester she got all A’s. She published a paper during her self-administered Avonex injection regimen. She never cried. After Boston came New York, and within months she learned the city is just as terrible when seeking accommodation for the disabled. Worse still is the invisibility of MS: “You don’t look disabled. This means constantly proving your illness to people.” She’s said that it’s impossible for people to truly understand and know you.
I sensed she grieved for the person she was, in specific ways. She can’t wear high heels anymore; the sneakers she toured the prison in “aren’t me”. Insult to injury: there’s sickness, fear and invisibility, and then we lose our heels? I reminded her we don’t know what will happen with MS, there may very well be heels in her future; but living with my own disease, I sometimes just don’t want to hear that shit.
She’s lived in many cities, advanced professionally, grew; she sees value in getting older and becoming oneself. She’s a young woman with apparently everything in order. Her laugh is sisterly and we relate so much- independent but anxious, passionate social conscience, brainy with a complete, sometimes overwhelming self-awareness. She’s “never struggled to figure out [my] problems, just couldn’t get past them" she told me. Indeed, she articulates (brutally well) ideas others can’t.
"You are deathly afraid you’re no longer competent to achieve anything,” she wrote once. “Sometimes you wonder if it will be depression or MS that kills you but you take comfort in knowing it will most likely be neither." She’s right. When there’s no cure, no platitudes that mean anything, there can appear no endgame. Like prison. But Linda is aware that, for all its burdens, chronic illness can liberate creativity, self-love and compassion. It can create a sense of achievement for moments others take for granted. And in that way, MS is unlike a cell. When I first found her, she was at the very top of the steps of the Philadelphia Art Museum, the Rocky steps. She was all the way up there, despite not feeling perfect, despite the sneakers, rocking unbelievable jewelry and badass shades. Did she see how amazing she was that day?
There is pain in “chronic”. I imagine that’s what Dickens sensed in Eastern State centuries before the midnight audio tours. He felt the resignation of life imprisonment, and the dimming likelihood of seeing light ever, ever again. MS too, affects the mind and spirit deeply, as much as the body. What he saw within the walls of solitary in 1842:
“I hold this slow and daily tampering with the mysteries of the brain to be immeasurably worse than any torture of the body; and because its ghastly signs and tokens are not so palpable to the eye and sense of touch as scars upon the flesh; because its wounds are not upon the surface, and it extorts few cries that human ears can hear; therefore the more I denounce it, as a secret punishment which slumbering humanity is not roused up to stay.”
The mind can disable as powerfully as the body. What Linda may sacrifice to MS physically, a life led with meaning and community is unmatched. 'Chronic' can sound like 'life sentence' only if we allow it to.